Guest Series: Part 5 - “Best practices” on the floor

This is a bit of a peculiar place to lie down for a thirty minute nap, or even just for a short mental break of sorts, but it is where I happened to land. The floor is beige laminate tile and I can feel the coolness of it permeating my skin and giving me a chill. I tilt my head to the right with as much delicacy as I can muster but I still feel it bang down as the spasming muscles in my neck contract, only to release again a moment later.

“Penny!” I call and within seconds the constantly goofy face of my guide dog appears at my side. I often imagine what she is thinking in moments like this. From her expression the only narration I can provide is “Okay. Cool. We are lying on the ground together now!” as she plops herself down beside me and places her head on my stomach. I watch as her head bobs up and down in time with my breathing, which admittedly is a bit laboured at this point.

I lay here considering all my options. I could crawl to the hallway, dragging my body across the floor in a style reminiscent of an injured snake. I could try to pull myself back into bed, but the chances of success in that endeavor are slim to none. I could try to figure out how to pull myself up enough to hit the call bell, but again the chances of any kind of success are limited. I could try to do many things, yet in this moment the best thing seems to be to just stay where I am and wait for help. We mustn’t forget that I am still in a state of perpetual spasm and my ability to control my body is lacking. I am hyper aware of this as my head bashes off the ground once more.

I have decided I kind of like it down here. The coolness which once stung against my skin is actually kind of nice. I am starting to be cognizant of the contrast between my frigid back and the warmth of Penny’s head on my front.

“JENNY!” says Kelly in a tone that is both panicked and furious, “What are you doing there?!?!”

“I fell.” I respond in a flat voice. I mean, what does it look like I am doing? It seems like a remarkably silly question to be ask someone when you find them lying on the floor in their hospital room. There is a limited number of possible responses and “I fell” is the only one that makes any sense in this particular instance.

“Well that was obvious. How long have you been there? Did you call for help? Isn’t that dog supposed to bark or something?” Kelly snaps back in rapid fire question mode. I can barely get a word in edge wise while she continues to question and judge me for my answers. When she learns I have been here for about 30 minutes she becomes furious and runs out of the room before I could say much else.

Kelly returned quickly with another nurse, Mark.

“This is Mark. We are going to lift you, okay?” She orders in a way that made it seem like I may be able to consent to this process.

“That’s a man.” I respond in my standard flat tone. Kelly knows my rules. She knows that I don’t like men involved in my health care. She knows the panic that has ensued in past admissions when a man has so much as entered the room. She also knows how much I hate being touched and she knows that physical contact is to be kept to a minimum.

“He is! You are right! You also have no choice right now because you are on the floor.” Kelly says in a cheery tone that was oddly sarcastic for the situation. I mean, if anyone has a licence for sarcasm in this moment, it is me. I am the one who can’t get off the ground by myself. I am the one who did nothing more than lean over a slight bit to get my phone out of my purse when my back spasmed and ejected me from the bed. I am the one who has been bashing my head off the ground for the last thirty minutes while waiting to be discovered. If anyone has a right to be bitter, sarcastic, or angry in this moment - it is me.

Kelly is not interested in negotiating and she has made this abundantly clear. I have had much practice resigning myself to undesirable situations in the past week and so I employ my new found skills and follow Kelly’s lead, although reluctantly. She is in charge, despite my hesitancy to literally release myself into her hands.

“Okay, Jenny, we are going to get you off the ground now.” says Kelly with a bit more compassion than our recent interactions have afforded me. She walks around behind me and helps me to sit up by lifting up my shoulders and pushing me forward. I flinch a bit as I feel her fingers pressing into my deltoid muscles while she attempts to stabilize my flailing body. I try to help as much as I can but it is hard when I am fighting both gravity and my rigid muscles.

Mark comes towards us and grabs me from the front. I feel my heart beating faster and it feels like it is rising in my chest. My eyes are starting to tear and my anxiety is growing by the minute. I feel trapped. I feel like I have lost all autonomy in this moment. I am on the floor and I can’t do anything about it on my own and I dependent on others. I want to scream “LEAVE-ME-ALONE!” but I know it isn’t worth it. Kelly will just snap at me that if I could do it myself I would have gotten up already and I actually know I can’t do it myself. I need these people even if I don’t really know them or like them right now.

Kelly slips her arms underneath mine and is now supporting me chicken wing style. I feel the pressure growing in my shoulder joints and my anxiety becomes coupled with pain. Years of using my arms to get around, whether it be with crutches or my manual wheelchair, has injured my shoulders and the spasms certainly haven’t aided in the recovery of any injuries.

Mark moves down my body and scoops my legs up into his arms. I try not to let the anxiety get the best of me but all I can think about is the fact that these two people have complete control of my body. I am literally in their hands and they are holding me, but not in the ways that I need in this moment. I want nothing more than for someone who is safe to come and give me a hug right now and remind me that my body is mine and that I am in charge. I try to remind myself but it doesn’t have the same effect, especially when I feel so vulnerable and violated in this moment.

“One…two…three!” says Mark and they hoist me into the air and swiftly lower me onto the bed.

“Jenny - you better stay in there! I will be right back because we have to do another assessment,” Kelly scolds while putting the side bars up on the bed before running off to grab the little machine that will ease any concerns about my breathing, blood pressure, or temperature. I sit in the middle of the bed and remain cautious of the twitching and spasming that could throw me out at any moment. Then I glance over at the side rails and realize that it would take a pretty spectacular set of spasms to throw me out of my new crib like containment. I sink back into the pillow wishing for this to end, wishing for medication to ease the spasms, and wishing it was time for my next dose of pain medication because my time spent on the floor and the chicken wing style lift had left me a 7 out of 10 on the pain scale.

Falling in the hospital is not a good idea. Apparently it really messes with their statistics and scares the living day lights out of the nurses who are seen to be at fault for any such incidents. This would be the first of four falls during the admission and each one would elicit a similar panicked response. I don’t think I will ever be able to convince the nurses that falling is a normal part of my existence as a 23 year old with disabilities. I fall at least once a week out in the real world - and then I get back up into my chair or into bed and move one. Here I need a bit of help getting back up because of the spasms, but I can still always get back up. The nurses don’t care about that though. They only care about the graphs and statistics that show each fall on the floor and impact their individual reputations for patient care. Independence and autonomy are constantly overshadowed by policy, “best practices,” and fear.

Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/